Although I have no voice, I want government to hear me.
I had cancer on my vocal cords about 16 years ago (28 years old at the time) and lived much longer than the average person that undergoes a tracheotomy and a laryngectomy. Although I am cancer-free, I have lived with varying degrees of pain for most of these 16 years which affected my social life, my job, and my state of mind.
After many failed attempts of courses which included anti-biotics, allergy medication and cortisone, I gave up and just accepted I was slowly dying. My stoma began to narrow and my breathing was impaired but I struggled on not even considering that there was help available.
A referral was written and I was sent to the local government hospital to see what could be done. No one really knew how to help. I did not want surgery so I opted for a trachy pipe, to keep my stoma (and airway) open. The pain got worse and the nerve damage went undiagnosed.
In November 2018 I ended up in hospice for three days, which was a blessing in disguise. Had I gone the normal hospital route my condition would not have been diagnosed for what it was. Many cancer patients don’t realise that palliative care is available at hospices and many hospitals do not have a proper palliative care department. The palliative care I received at hospice changed my life!
At South Coast Hospice, I was given the right medication and pain management. I was also counselled and my progress was monitored and followed up on a regular basis. I am now pain-free, can walk again and 2019 was the best year of my life. I have energy and a positive outlook on life. I only take one trepelline daily for nerve damage and I also take one anti-inflammatory and between 2-4 tramadol. Initially, I was told I may need to stay on two of each three times a day but I managed to get it down to this. I was given the support I needed by a strong hospice team.
Why I think palliative care should be available to every South African
The main reason has to do with pain management. Chronic pain becomes so debilitating that people cannot hold down jobs or having fulfilling personal relationships. This is because chronic pain, left untreated destroys an individual slowly, physically, mentally, emotionally, and spiritually.
So many patients who survive life-threatening illnesses, like TB, AIDS, and cancer end up with varying degrees of pain that eventually affect our quality of life, in all areas.
Some hospitals are fortunate enough to have small palliative care programs starting up. But this is not good enough. Palliative care needs to be highlighted as an essential part of the government healthcare policies.
We need to get government to make things happen. Our last Minister of Health signed off on a National Policy Framework and Strategy on Palliative Care that is meant to be fully in place by 2022.
Let’s hold them accountable!